A few weeks ago, the lovely Felicia Distad invited me to be part of her excellent podcast series.
She describes the podcast as:
Let’s talk about ALL THE THINGS. Health, family, friendships, kids, work, and how to show up every day and fight through it all. Lady, I’ll remind you that you can do hard things because we have already done hard things.
She also has vasculitis, the same type as me, Wegeners/GPA. We chat about our journey, living with kids and how to keep on fighting no matter what is thrown at you.
Please note this is my personal experience of Rituximab, your treatment may vary, you should discuss your individual plan with your doctor. I am not providing any personal advice.
So you need to have a biological infusion?
My first thoughts were:
What the hell is that?
How long will it take?
Will it hurt?
And the most important question:
Can I go to the toilet while I’m hooked up to the machine?
My infusion was called Rituximab (also known as Rituxan or MabThera), and it was to treat my ANCA associated Vasculitis. I had six of these infusions a few years ago, but I had totally forgotten the whole experience with this lifesaving drug. The Vasculitis UK patient group calls it Unicorn juice for its magical powers, which always makes me smile.
So what is a biological infusion?
Biological infusions target a specific immune reaction in your body which is causing the inflammation response. Rituximab is a genetically engineered chimeric monoclonal antibody which depletes the B cells which have the marker CD20 (a protein) on the surface of your cells. Rituximab sticks to the CD20 proteins, and the cells of the immune system pick out the marked cells and kill them. This reduces the immune system actions against us. This is all a little technical, but basically, it reduces your B cells and diminishes the immunes system ability to launch an attack on self (i.e. you).
How did I feel the days before and why did I need this treatment?
Before the treatment, my vasculitis was flaring, it affects my ears, nose, eyes, kidneys and the main aortic arch out of the heart. I am exhausted, I cannot think, I cannot walk up a small hill, and I cannot concentrate or remember the right words to say. I just want to sleep all the time, and I’m off my food even though my steroids are increased and therefore I should have an increase in appetite. I am desperate for something to make me feel better and to give me some energy.
It isn’t helping that my birthday is the day before the infusion, and my lovely husband is planning a meal out to celebrate… I go along with it and just accept that afterwards, I will sleep for a week. I’m secretly looking forward to the sleepy side-effect.
Getting prepared
You sit in a large chair for a long time during the infusion, so I would suggest you prepare by picking out your most comfortable clothes, fashion should be ignored. I choose a long tunic and leggings. Remember to wear sleeves which you can roll up to get the cannula in the crease of your elbow and to allow access for the nurses to check your blood pressure. I went in slip-on shoes but took a pair of socks so that I would lie in the chair without my shoes on and not worry that everybody will have to look at my manky feet. Also, this will keep you warm, and then if you get too hot, you can take them off.
Arriving at hospital
For those who have read my book, you will be fully aware of my love of cappuccinos, we collected two large cappuccinos and Jaffa cakes on the way to the ward. We checked in at the ward reception and were allocated a chair number, a big blue thing that is comfortable but does get a little hot halfway through (or maybe that was just me overheating). Then you wait for the nurses to take your observations, blood pressure, oxygen levels (through your finger using a pulse oximeter) and the dreaded weigh-in.
I pop to the toilet before the next stage as it gets harder to go once you have a needle in the arm. You then have the cannula needle put in, mine was positioned at the elbow crease, but it can be in the back of your hand. This part is always a challenge as my veins seem to disappear as soon as somebody looks at them.
And that is it, you are ready for the treatment.
Treatment process
Well, it takes between 5-6 hours, but time flies, mainly because it really does knock you out. You are given Paracetamol, Methylprednisolone and Piriton (an antihistamine to reduce the risk of a reaction to the Rituximab) as pre-meds. Then a small amount of fluid is pushed through the cannula to check all is ok, next the drug is hooked up. It is a small bag, about 350ml, but it goes in slowly.
My last Rituximab was about 4 years ago, so the nurse explained that they would go slowly to ensure I didn’t have a reaction. If you have had a successful one recently, they can go faster. For my infusion two weeks later it went in quicker, it cut the time down by 45 minutes but going more quickly made me feel a little sick.
The nurse will check your blood pressure and oxygen levels every 30 minutes, and the machine will beep every 30 minutes to get a different nurse to come and set off the next 30 minutes. If you are tolerating the treatment well, every 30 minutes the drip rate of flow is slightly increased. So, although you are sleepy, you are never allowed to sleep for long, as your ‘vitals’ need checking all through the treatment.
Coffee and biscuits were brought round regularly, and sandwiches offered at lunch, my husband had popped off to buy lunch already, so I didn’t sample these.
Once the drug is fully infused, another short fluid flush is completed, and then once the cannula is removed, you can go home. Go steady, you have sat down for over 5 hours and may feel a little wobbly, but otherwise, you should feel quite ok. If not, please tell somebody.
And yes, you can go to the toilet throughout the infusion, but you remain hooked up to the infusion pump, so it is a bit of a tricky manoeuvre, think about a shopping trolley with a dodgy wheel in the supermarket.
Travel home and the evening
It is recommended that you do not drive, partly due to the Piriton causing drowsiness. I couldn’t keep my eyes open or my head up, probably not the safest way to drive! In the evening I ate quite well as the infusion didn’t seem to put me off my food, but I don’t think my conversation was up to much, I think my brain was somewhere else, probably over the rainbow. My parents-in-law were staying as they had collected my children from school, which was brilliant as it meant there was enough bustle in the house for me to go to bed super early and leave them all to it. Sleep came quickly and for a long time.
There are a few side-effects that you need to keep an eye out for, but if you have any concerns, please call your doctor immediately. Side-effects include risk of infection, diarrhoea, peripheral oedema (swelling), muscle spasms, arthralgia (joint pain), back pain, dizziness, tremor, insomnia, cough, dyspnoea (difficulty breathing), epistaxis (nose bleeds) and hypertension (high blood pressure)[i].
I had a little swelling in my fingers and lower part of my legs, and during the infusion, I got very hot halfway through. Both were manageable and didn’t really cause me any concerns.
Next few days
Well, I slept for Britain, a truly fantastic amount of sleep. I’m not sure scientifically the reason for this, part of it may be the antihistamine (Piriton) or it may be the infusion or the vasculitis flare. I also suspect that part of it is the fact that the treatment has allowed me to stop and rest. I always continue at such a pace, but once that drip is put up, I feel that it is my time to completely stop, to rest and to let the unicorn juice do its magic. The relief of letting everybody take the strain for a few days is unbelievable, so I suggest you go with this feeling and let your body rest, start to heal and trust your response to the treatment.
I was informed by my consultant that it can take between 4-6 weeks for the effects of the treatment to be felt, so do not expect instant results.
Enjoy your sleep. Goodnight and sweet dreams.
Fingers crossed it kicks vasculitis butt.
Jane Xx
You can read more of my work, including my book Chronic Illness: learning to live behind my smile, via my website: www.chronicillness.co.uk
Quick legal comment, this blog is my journey, none of the statements is personal advice for you, if you need personalised help, please speak with your doctor.
Some days I feel very flat, not flat-chested, flatlined or flat earthed, just plain flat; the feeling where you really don’t care what happens, what you eat or wear.
I’m not sure if you class it as fatigue, depression or some other title that may fit the mood. I don’t like to admit that any of these words apply to me, so it is merely a flat day. Maybe I am not feeling well, which is why I just cannot be bothered for a whole day, or perhaps it has nothing to do with my illness. I just don’t know.
I think we all have these days; COVID-19 has brought these days to us all, and they can be hard to deal with and accept.
What happens on a flat day?
The day starts with not really fancying breakfast, randomly staring into various cupboards trying to work out what to eat. I tend to go for lemon curd on toast with the hope that the sharp taste of lemon will kick start my day, it rarely does and typically tastes too sweet.
Next is the ‘force’ yourself to get showered and dressed. Showering is an effort and leads to me standing there, staring at the showerhead, hopeful that the hot water will awaken my senses. Often, it doesn’t have the desired effect.
The shower can be exhausting, so I need to sit down to rest. This is also met with my body being uncontrollably hot, which ruins the shower’s desired outcome.
Yet another reason to feel flat.
The choice of clothes does not matter just as long as they are practical and do the required job, i.e., keep me warm and presentable for a video call. Time spent on hair and makeup is minimal (If there is any effort at all). Priority is to get through the day without crash landing.
The day continues along these lines, everything requires a massive effort, and I am strangely unemotional about the whole shebang.
Don’t post on social media!
These days, my brain is working non-stop, all my worries come to the surface. Am I starting a flare? Is something seriously wrong? Why do I feel like this? How can I change these feelings? Can I get away with going back to bed?
I know these days are not positive, but I know that they will pass, and I will bounce back and be cheerful again. I am resilient, but some days there just isn’t the energy to face the world. Sometimes I post on social media, and the next day when I read it, I’m embarrassed by my message and quickly delete the comment as I hate the weakness it shows.
Why do I regret posting the reality? Probably because I don’t want sympathy or fuss, these days are hard, and I know that everybody has them. I don’t want my friends and family to worry that the illness has retaken hold. It is frustrating to never ‘get better’, this is an extension to that feeling. I want to be better and healthy again, but I also know this will probably never happen.
Let’s just get the day over.
I would prefer it if these days did not happen, but they do, and they will continue to happen. So, how can we cope? How do we just get them over? We want them to be finished as soon as possible and return to feeling a bit brighter. We can rarely cheer ourselves up on these days.
If I can, I try to indulge the feelings and let them play out, there are reasons for these days, so I think if I can let my body and mind process them, maybe I am doing the right thing. Sadly, most days are crammed full with an increasingly busy schedule and the number of possible PJ days are in short supply.
So, I do what I always do, put on a big smile, act like all is fine and go out and face the world.
Sometimes the world lifts my spirits, and sometimes it grinds me down further. Either way, I try to remember it is only one day.
Good morning.
The next day I wake up and feel different. So, I brush aside the previous day and blame the medication for my changing moods. Nobody wants to talk about illness and misery, so the day gets wiped from memory, until the next time.
This is my experience with a rare disease, but I feel that COVID-19 and lockdowns have brought this feeling to us all. Flat days will happen, it is how we react to them that will make us a little stronger or resilient.
Take care and stay safe from this horrible virus.
Jane Edwards is an author of ‘Chronic Illness: Learning to live behind my smile’, about a journey of learning to live with a rare, invisible chronic illness.
I am so tired of governments assuming that we are on one side or the other of an argument! We are all either Brexiter or Remainer, believe COVID is real, or we don’t, and we are racist or not. There is an assumption that we pick a political party and cannot ever agree with the opposite party. And the politicians, well they just seem to actively disagree with the other parties for no genuine reason.
I am not sure about you, but I am very fed up with all these binary discussions. It became evident to me over the last few weeks that we need a more in-depth conversation. When there was a suspicion that ‘shielding’ in the UK for patients at high risk of damage from COVID was coming back into the mix, I was scared. Please see my previous blog on coming out of shielding. I wanted to hear other people’s opinions, so I asked a question on Twitter about who wanted it to go back into full shielded lockdown. The response was very mixed, and there were lots of reasons why arguments for both restarting shielding and remaining as-is. So, although the answer was yes or no, the reasons and the thoughts behind this are multiple and complex.
For such a simple question, the reasoning and thought that goes on behind is not at all simple. Yet, this isn’t shared in the press, the extreme stories are picked because they support one side of the argument, instead of representing people who fall somewhere in between the extremes.
Stop reducing the critical discussions to a headline
I know that we now live in a world where we can have information every minute of the day, but that does not excuse the lack of depth to the stories. I voted to remain in the EU, that does not mean I hate all those who voted for Brexit, and it does not mean that I think the EU is perfect. It means that when I weighed up all the pros and cons that are important to me, the remain argument had more positives. Yet when I listen to the debate, it is like there are only two opinions, Brexit or Remain. This binary choice does not represent the thoughts of people I speak too. There is more to discuss on this issue than a selection of two boxes on a ballot paper.
We do not live in a comic strip.
I have never felt driven to write about politics before, as I am not active in this arena. I prefer to write about things I know or have experienced. Still, the endless lies I am reading or politicians merely saying the opposite of their opponent is terrifying. We are facing many critical events in the world. I want to believe that the people who lead us are trying to do the best for the people they represent. I want to believe they are not just doing the best for their career.
Don’t create cartoon ‘baddies’ for us to hate just so you can come out as the hero, this is not what our world needs right now. We need care, empathy and a passion to do the right thing. We need great leaders who are not two-dimensional characters who have a good headline but no substance. We are facing some of the most challenging times in living memory, and I want to believe we will get through this with dignity and respect for others. I want to believe this, I really do.
But I think I am going to be disappointed.
Time for a change, or am I just naïve?
I feel it is time for a change, time to move away from only two options on the voting card, time to move away from being left or right. What is the right thing for each decision? In the UK I sometimes agree with the conservatives and sometimes with labour, I don’t agree with either entirely! And some days I strongly disagree with both.
How can we move forward and get some respect back for our politicians, how can we start to believe those who represent us are doing the best for us? Maybe things will never change, perhaps I am living in a dream world where respect and principles are a thing of the past.
Maybe I am naïve, and this is the way the world has always been, and it will always be this way. But I hope we are not stuck with this type of politics forever.
Jane Edwards is an author of ‘Chronic Illness: Learning to live behind my smile’, about a journey of learning to live with a rare, invisible chronic illness.
I recently wrote a blog for the UK based Genetic Alliance about my feelings on coming out of ‘Shielding’ and how I feel I can return to life after the COVID 19 initial pandamic response.
I have thought long and hard about how to approach this blog; it is such a hard situation to write about. Half of me wants to make it light and supportive, but half of me is terrified that I am sitting here waiting for death to arrive at my door. I’m immune-suppressed and classed as high-risk, the UK government has asked me to ‘shield’ for 12 weeks, minimum. This means I am not to leave my house for three months and should social distance from my family. This is a harsh message to receive and makes me feel very vulnerable and leaves my children petrified. Using the word petrified and it not being an over-exaggeration is a horrible state of affairs.
This situation is not normal in any sense of the word. So, I have decided to split the blog in two, one for my fragile days and one for my more positive days in lockdown.
I cannot ignore the truth of how vulnerable and fragile I am.
I am ill, I have been ill for eight years, I have felt fragile and vulnerable for eight years, but I have always tried to ignore the fact that I have a serious, rare chronic illness. I am quite successful at pretending all is happy and healthy. However, receiving a letter from the government telling you to stay home, avoid your garden and social distance from your family, really does hit you hard. You are suddenly exceedingly aware of your own mortality; this is not a positive feeling. I am reading about patients being contacted by GP’s informing them that they will not be a priority for a ventilator should they get COVID-19. I understand the NHS have to make difficult decisions. Still, I would like to consider the difficult choices when I am in the situation, not right now when I am sitting with my children. I cannot tell you that I will be happy not to receive a ventilator. Of course, my answer right now is that I want to fight to the bitter end. I am aware that this isn’t everybody’s choice, we all have the right to make our own decisions. The issue is about timing, the community of people with ‘underlying health issues’ are scared, and I do not want to think that when I need help, it will not be there.
For me, all this information is making me feel more anxious. I know that we cannot treat everybody to the same level of service that the UK Prime Minister received, but please don’t write me off before I start my fight.
In eight years of tests, treatment, setbacks, flares and horrible medication, I have never felt so vulnerable. I am scared. I have not left the house for 5 weeks, and I cannot comprehend the whole situation. I am trying to block the world out of my head, but the information is everywhere, and most of the information I see is not based on fact, and all this is breeding pure fear.
Self-isolation and the Serenity Prayer.
On my more positive days, I am trying to find things to do, trying to keep myself busy and trying to keep my body moving. Some days I am successful at this, and other days I am genuinely dreadful. The self-discipline and determination to start each morning afresh are tough to find inside me. When you have nowhere to go, it is challenging to set a timetable or list of things to accomplish and actually stick to it.
The world outside gets into your head and starts playing games. What if I catch it? What if my parents catch it? How can I stop the virus seeping into my life? How will my family and friends respond to it if they catch it? Will they get a mild case, or will they end up fighting for their life? This is all too much for me to cope with every day. For me, it is easier to try and imagine we are on a home vacation and ignore the news and social media. I am trying to concentrate on just the things I can influence. It is similar to the old Alcoholics Anonymous saying taken from the Serenity Prayer by Reinhold Niebuhr:
God, give me grace to accept with serenity
the things that cannot be changed,
Courage to change the things
which should be changed,
and the Wisdom to distinguish
the one from the other.
I CAN control my physical location (stay at home), my attitude, my schedule, my activity levels, and my diet.
I CANNOT change how the virus acts in the world, what other people say or how we react physically to the virus. Therefore, it is a complete waste of my energy to worry about these things.
Two sides to every story.
Some days I’m positive, and some days I just want to break down in tears, but I think this is the normal feeling for most people in April 2020,
One day, we will look back at this time, when we were hit with a pandemic, we never seriously considered to be possible, and learn from our actions. I do not know what changes we will wake up to when we are released back into the world. Nevertheless, I am hopeful that the hate that has been brewing in the last few years globally will be rejected. I hope that we will come together to fight this universal crisis.
Something positive must come out of this horrible period of history.
Thank you for reading, please stay safe in these crazy times.
Jane
If you want to read more of my work, please view my book on Amazon, the book is available in 10 countries, the link takes you to the UK version. All other links are found here.
Today I launch my first book, I’m nervous, excited and also terrified. The book started as my own therapy of how to deal with everything that was changing in my life, and then I started to write down things I had learnt along the journey. And then I thought that the insights we had gain may just help somebody else. And so the idea of a book formed.
It has taken years, and some very kind supportive friends and family who have proofread my thoughts and help turn them into a book which I am now very proud of. I hope you enjoy reading it and I hope it can help you on your journey.
One hospital visit for a routine appointment and I leave the building six and a half hours later, I like to think it is some great marketing pitch to sell the food in the hospital and boost funds, but I don’t think they are sophisticated enough to plan that far in advance.
I only entered the hospital to find out the results from my latest scan, which were stable in comparison with Last year’s results, but after a mess up with the appointment bookings my 11am appointment become a 12.15 appointment and then the consultant was running 90 minutes late as some idiot had booked all the appointments in for the morning. The consultant and nurse were very apologetic and it is hard to get annoyed at somebody who had nothing to do with the planning, but it still meant that my whole day involved waiting around.
When I finally saw the consultant, she was concerned as I have a simple burst blood vessel in my eye, but due to the condition, this could mean something serious so I was added to another clinic list. Therefore, after I had bloods taken I then sat for another hour or so to wait to get my simple bloodshot eye checked out. It turned out to be a normal bloodshot eye, which will heal by itself.
I got home exhausted, fed up and a day behind on work. The time it takes to see doctors, visit clinics, and have all the necessary tests can be underestimated and not fully understood by employees. I took work with me to do, but it isn’t possible to get much done sitting on a small plastic chair in a drafty corridor, which doubles as a waiting room.
Having a chronic illness sometimes feels like a full-time job, getting medicines, measuring then out for the week, visiting GP’s, visiting clinics, having tests, going for the regular blood tests, remembering flu jabs and precautionary treatments… agggggggggggghhhhhhhhhhhhhh when can I have time and energy for fun!
As grateful as I am for all the monitoring and support, I would love a six-month period without visiting a hospital, GP surgery or having a needle pushed into the ‘x’ marks the spot on my arm to draw more blood.
I’m happy to lose the six and a half hours if you give me a six and a half month break from visits.
This week, we had a sad loss in the family, and it has been very emotional. However, for me there is an extra dimension to the news, how can I manage the stress levels and ensure I do not cause a flare in my disease? A flare is simply a sudden worsening of the symptoms of a disease or condition.
Selfish? Probably.
It is incredibly hard to deal with this situation without sounding very selfish and self-centred. However, I think we need to look at this from a different angle: if the stress of our loss does cause a flare and I end up bed-ridden and needing further treatment, then the added stress for the whole family will double the current levels and that will not help anybody. It is hard for people without a chronic condition to realise that you are not being selfish in this situation because you know that you have to think about how your body will react and you have to hit that realisation head-on and try to prevent it from happening. To some friends, however, you just sound like a paranoid annoying self-centred person, to friends and family who understand, they will support you in this plan, these are people you want in your life, surround yourself with these people.
So how am I trying to cope with this?
Ok, I am not a saint, so immediately I reached for a bottle of beer. Not healthy I know, but it made me feel nothing for a few hours… so it worked perfectly. But I then decided this probably wasn’t going to work (once I had woken up and decided I felt a ‘bit rough’), so this week I have tried to eat lots of veg, take a little time away from work (agreed with my boss) and gone for long walks with George my faithful but crazy Labrador. Currently, I am trying to resist raiding the crisp box, and am trying to eat the healthier Cranberry and Macadamia nuts on my desk. They don’t taste quite as good and salt and vinegar chipsticks, but I know they taste better than hospital food, and therefore at this moment they must be my snack of choice.
I even tried these seaweed things… but I wouldn’t recommend them, the whole packed is now in the dustbin.
Family ‘discussions’
It is a difficult time, and tensions are running high, arguments are natural, but also a risk to my health. I have to be honest, since getting ill 5 years ago, my ‘need’ to be right in all arguments has diminished, and I will now let things just go over my head for the sake of trying to stay calm. It doesn’t always work but sometimes it does allow me to walk away without the instant rise in blood pressure that I can feel pumping through the blood vessels. It is hard to do this, and again I am not perfect at it. However, the selfish option is to let the argument go, if it isn’t critical, walk away and discuss at another time when you are all a little calmer.
Anyway, I am now off for a deserved cup of tea followed by a long walk in the autumnal sunshine. Remember you are a little like a car, if you do not look after yourself, with maintenance and the correct fuel, then you won’t be able to support anybody else as you will break down, so being selfish is really like being generous to everybody else around you.
Stay healthy.
x
(and then a day later I gave in and ate a massive bag of salt and vinegar crisps.)
